Get to Know Us & Our Community!
Join us at one of our live community events for sharing, learning, support and connection.
You are not alone in this journey!
Important: Due to the COVID-19 pandemic, we have made the difficult decision to indefinitely postpone our community events, including our annual gala Rare Finds 2020, Outrun Rare 2020, Backyard Ultra, and our P2P gatherings to ensure the safety of our valued community. Please read our Chief Medical Officer’s message here.
International Rare Disease Day
Each February 28th (or 29th), the global rare disease community comes together to create awareness on International Rare Disease Day. The Rare Disease Foundation takes this opportunity to host informative presentations by microgrant recipients to share their research findings with rare disease patients, their families and stakeholders from the medical and research community.
It’s an engaging family event with food and drink as we also share success stories highlighting patient and caregiver needs, and our progress as a research-focused organization in creating awareness and innovative cures and treatments. Children are treated to their own fun with activities and snacks.
Note: This event is hosted by the Rare Disease Foundation across multiple cities in Canada and may differ slightly depending on the community needs.
Annual Summer Picnic
Since 2009, the Rare Disease Foundation has been hosting this casual get together which allows parents and patients to socialize and get connected to other families living with a rare disease or condition.
This annual picnic also serves as a valuable opportunity to promote awareness of rare disease and strengthen our national community, while providing updates and announcements about new research innovations and clinical resources.
Sibling Appreciation Day
With a focus on the family of patients and caregivers, the Sibling Appreciation day provides counselor led workshops that acknowledge the emotional needs and supports that siblings of rare disease patients need.
The workshops on Sibling Appreciation Day focus on communication techniques, expression of feelings, self-esteem improvement and healthy emotional coping mechanisms. We provide free resources to help strengthen families with focused support.
Rare Finds Gala
This annual fundraising gala is all about stimulating the senses. Tastebuds and sight to be exact. Each year we partner with renowned chefs, mixologists and brewers to concoct a myriad of delectable fare to entice the senses. Entertainment and a raffle draw of exciting prizes round out the evening.
Please visit our calendar of events for more information.